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blondie83
12-04-2008, 01:00 AM
hi,
i am a 25yr old female from australia and looking for someone 2 chat 2 who understands my frustrations. by the looks of things i have come to the right place!
i was diagnosed with SLE nearly 2 years ago now after getting chronically ill & getting a lesion-type rash all over my chest. i had had the rash on and off for 12months prior however it was diagnosed as a 'sun/heat rash' every time. this time when i was very ill, they thought i had a virus and i felt like my GP fobbed me off a bit thinking i was a hypocondriac (which is very frustrating because im exactly the opposite). dont get me wrong i am still happy with my GP, he does look after me. anyway to cut a long story short, he sent me to a rheumatologist and together they made the diagnosis. i have been on quite high doses of prednisone and also plaquenil. after being on them both for 18mths, am now nearly completely off them as i had side effects which were nearly as bad as the symptoms themselves. going OK off them. pred & plaq did nothing for me in terms of the pain in my arms & legs - numbness, aching, weakness, and throbbing - i guess you all know the drill... am seeing my rheumatologist very regularly for health checks. i know i am very lucky2 be able to come off my meds as i dont have any organs involved.
finding it a bit hard to cope as i feel slack on my husband, my dad and even my friends & workmates. they all dont understand because i look like im fine, but inside i am struggling. im in pain 24/7, very tired, weak, dizzy, constant headache, often nauseous. my hubby and my dad r my world and they try to look out for me, but it is hard not feeling like i am a hypochondriac when i tell them i am not feeling well every day for 2 years! i used to be ultra fit, playing sport internationally, gave everything 200% yet still listened to my body, but now i cant even do the most simple things around the house without being in pain and exhausted. i hate taking medication but at the moment i am having a lot of trouble sleeping. every hour or two i wake up through the night in a fair amount of pain (the same pain like when you fall asleep on your arm and it becomes that really sharp pins and needles pain if you've slept on it for ages) i get that through my legs a lot and through my arms also. lack of sleep and amount of pain makes me very irritable and short tempered which is totally not like me. i feel sorry for my husband, he luvs me to death i know, but im not the same laid back, cruisy, active girl he married a few years ago. he has been on the receiving end of my snappy attitude a few times :(
i was recently hospitalised as my docs said i had a virus, but my most concerning symptoms were rapid heart rate, difficulty breathing, and bad dizziness. the frustrating part was i had all sorts of tests done on me - ECG, heart ultrasound, lung xrays, and they all came back normal. i don't understand why i feel so unwell and all these tests come back normal. my heartbeat occasionally got so quick and physically hurt and i honestly thought i was going to have a heart attack or something. it really worried me, yet the docs cant find any reason to think that something is wrong. my heart / lung symptoms have since settled quite a bit which i am releived about.
i assume there are other out there that are having the same problems? what do your doctors say?
i really want to try and get pregnant early 2009 and am a bit concerned about any possible risks...?
looking forward to chatting to someone and hearing about their experiences.
xx

KathyW1958
12-04-2008, 06:16 AM
Hi Blondie,
Welcome to the site. My name is Kathy and I have SLE Lupus. I will be 50 years old this month. I have had Lupus from what the Rheumatologist tells me for about 44 years, basically all my life, but I did not get diagnosed until I was 36 and nearly died from it. I am wondering if your doctor may have put you on Imuran as that is one of the drugs that seems to help me along with Plaquenil. I dislike Prednisone and refuse to take it due to the horrendous side affects I experience with that drug. I hope that the doctors can figure out a good medical regime. I don't knnow much about the pregnancy with medications as I had both of my children before diagnosis. I was told when I got diagnosed and put on medications not to have anymore children. I was 36 at the time, so that did not bother me. Have you talked to your doctor about having a baby?

There are a lot of good folks in here that have had children while on medications and maybe they could address this issue better. I hope that you keep posting.

Hugs,
Kathy

ASANA
12-04-2008, 06:16 PM
HI BLONDEE MY NAME IS ASANA AND I HAVE SLE LUPUS SINCE 2003. I HAD THE SAME PAIN IN MY LEGS AND I HAD TO GET TWO TOTAL HIP REPLACEMENTS BECAUSE OF THE PRED BUT I AM GLAD I DID I HAVE NO TYPE OF PAIN NOW. (LOOK MORE INTO TO IT , THE PAIN IN YOUR LEGS )

Saysusie
12-04-2008, 07:45 PM
Hi Blondie :lol:
You are right, you've come to the right place to be with people who understand you, do not judge you, and who only want to provide you with any type of help that we can.
Your story is so similar to what many of us have had to go through. I'm sorry that the Prednisone and Plaquenil did not provide the relief from symptoms that you needed. Please know that there are other medications that can be tried and, hopefully, you will find a combination of meds that works for you.
It is unfortunate that, no matter how we hate it, we must take medication. Lupus is a disease that is systemic (meaning that it can attack every part of your body, including internal organs) and, without medication, the inflammatory process can go unchecked which could lead to serious organ shut-down and even death. So, we must take medication to prevent damage, or to slow damage, or to reverse damage, and to provide relief from pain, fatigue, and other symptoms.
Lupus not only affects us physically, it affects us emotionally. So, like you, we find ourselves snapping at our loved ones, losing our concentration, suffering from "brain fog", and feeling lonely and alone (to name a few ways that we are emotionally affected).
It helps to know that you are not going crazy, you are not a hypochondriac, and that you are not being lazy.....You Have Lupus.
We all understand and will do our best to help you as much as we can. Welcome to our family!

Peace and Blessings
Saysusie

purple_butterfly
12-05-2008, 05:40 PM
Hi Blondie and Welcome;

I was diagnosed with Lupus 5 years ago. I understand your concern about pregnancy during Lupus. I had my older two kids before I was diagnosed with Lupus and started having symptoms shortly after my second was born. It took them almost 3 years to diagnose me. Anyways, I had 2 miscarriages after my second child and was told it was due to the Lupus. I was put on birth control and scheduled for a tubal ligation. When I went for my surgery, I was told I could not have it because I was pregnant. SURPRISE. I was told that I would probably not carry the pregnancy to term. At 10 weeks, I started bleeding. I had an ultrasound and was told that the baby was fine but there were 2 placentas. I miscarried a twin.
Throughtout the pregnancy I was monitored very closely by my rheumatologist and my high risk OB and I am happy to say that I delivered a healthy baby boy two and a half years ago.
Most women do good during pregancy as long as they are in remission when they get pregnant and Plaquenil is not harmful to the fetus, so you can remain on the medication during the pregnancy. Unfortunately, I had a bad flare after delivery and it has not stopped.
Talk to your doctor and find a good OB that will monitor you closely before, during and after the pregnancy.
Good luck to you (and I hope you have a healthy, happy pregnancy!!)
Kim

blondie83
12-05-2008, 10:58 PM
thanks for the replies guys...im really grateful. its great to read about other peoples experiences and recommendations.
is there anyone who can suggest a course of action for the pain in my arms and legs / or recommend i try anything that helps them? i keep seeing my rheumatologist about it but he seems to be at a loss for a solution...
thanks again to those who replied - much appreciated.
xx

sits_inthe_corner
12-06-2008, 03:49 AM
Hi blondie,

Ask your doctor if seeing a physical therapist would be helpful for your pain in your arms and legs.

They do have treatments and suggestions for excersizes that can help to build up the supporting muscles around the affected areas.

I would also suggest trying sport braces for your joints. Be careful to try these out. My physical therapist tried to push a brace for me that had hindges, I found that the soft sided ones worked best for me. So don't be afraid to stand up for what you feel is in your best interest.

Depending on reason for your pain, alternating hot and cold compresses can be a big relief. Do not ice any longer than 10 minutes at a time.